Home of the Four Trans

“Every day is my birthday!”

“It’s OK, Baby. Maw-mee’s heeeeere,” I crooned to him while changing lanes. “We’re almost there.”

We had just exited the freeway on the way to pick up Nathan from Lifetime, and Justin woke up from his nap. What started as a croaky whine turned into a painstakingly loud “aaaahhhhhh.”

Naturally, I freaked. This kid does not cry unless he’s hungry or in pain. Having been fed an hour earlier, I ruled out the hungry thing, and started wondering what was strangling or inflicting pain on my kid back there. The sun? A toy?

We were stopped at a red traffic light. At this point, the smooth, loud “aaaaahhhhhh” turned into choking ah’s, and I had visions of his lips turning a deep purple as he tried to gasp for air in between his screaming.

“Justin! Listen to Mommy. We are almost there! Stop crying. You need to breathe!,” using my stern voice hoping he’d just listen (smart trying to reason with a one year old, right?).

In the midst of doing so, I missed the entrance to the parking lot of Lifetime. Argh.

“Justin, calm down. We’re almost there,” I pleaded to him.

Finally, a few blocks down, I turned into a shopping center. As soon as I parked the car, I jumped out, with the engine still on, to come to my little boy’s rescue.

I opened the back door to sure enough find that his lips had turned a deep purple. His full head of black hair was drenched in sweat.

I’m even more freaked. His heart was working too hard!

“Baby, I’m sorry,” I began as I unbuckled him, “I love you so much.”

He was pissed. He responded by thrusting his body upward, like a little superman trying to break through the chains of his car seat buckles and escalating the tone of his cry.

“OK! OK! I got you, Baby,” I said as I scooped him out and let him free.

I placed him on my shoulder and his entire body melted into mine. Awww.

After 5 minutes of studying the leaves blowing in the wind, and the patrons dining in the outdoor patio of a restaurant, I decided to give putting Justin in the car seat another try.

“Justin, we have to pick up Nathan, OK? That means you need to get in your car seat (I point to the car seat). Is that OK with you?”

The corners of his mouth turned into a frown, and his eyes squeezed together in preparation for more wailing.

“Justin,” I scolded him, “it’s only another 2 minutes.”

He studied the fluttering leaves of a tree completely oblivious to my words…ignoring me.

I had no choice but to put him in…screaming.

As promised, two minutes later, we were in Lifetime’s parking lot, with me pulling him, purple lipped and all, out of the car seat.

“No, Justin. This is not acceptable,” I scolded him. “You cannot cry like this in the car. You need to breathe!”

Smile.

Scrunchy-faced smile.

I’m in trouble. This kid is learning from his brother.

His body glistened against the sunlight peeking through the blinds of our bedroom window. His hair, still damp, matted against his forehead. He laid on his back with his arms waving in complete disharmony as Mommy fawned over him. He is most irresistable after a bath, as he shows of his rolls and battle wounds.

I play a game of peek-a-boo with him. I place a small wash towel over his face and ask, “Where’s Justin? Where’s Justin?” He’ll pull the towel off his face to reveal a little mischievous smile.

For 9 months since he was born, I wondered if he’d ever learn to do anything other than look at me and smile. I wondered if he was there. All he’d ever do was stalk me with his eyes and smile when I caught him looking.

Now, at 12 months, he comprehends how to play a game.

Not only that, but he can also wave on command to “hi” and “bye.”

He cocks his head to the side in curiosity.

He fights with his brother (note the position of his hand in the second picture after Nathan overpowered the book).

He shows expression in his face (and tolerates tummy time much better now with no crying).

I am a mother beaming with pride!

In related news, his right arm is improving, as is his the function of his right hand (both affected by the stroke). In physical therapy sessions, he is learning to get up on all fours and stand with the goal of being able to get around on his own by Christmas (his therapist is a very optimistic person), either by crawling or walking. His right leg seems to be affected also, and is much weaker than is left, so he does not bear weight as well on that leg. But, no biggie. It will improve with time and practice…and possibly a leg brace.

He favors his left hand, and likes to hold things in it–toys, food, clothes.

When he sees someone around him eating, he’ll start smacking his lips together.

When we give him food in his hand, he just looks at it, and continues smacking his lips together. He doesn’t quite understand that the food needs to go into his mouth first.

There is no doubt that he’s behind his peers in his age group. The therapist’s evaluation reads that he has the skills of a 5-9 month old infant…mostly because he cannot use his right side. But, I do not dwell on this. As you can see, he is showing progress, and is such a light to have around. And, he is still around.

Really, what more can a mother ask for?

P.S.–the pics are for you, Megan!

For those who don’t already know, Nathan and Justin both had the same due date, August 15th. Interesting, right? However, Nathan came out naturally on the 13th, and Justin was induced on the 8th. I’ve always wondered if I had allowed Justin to come naturally if both my sons would have the same birth dates.

Anyway, now that their birthday extravaganzas are over, we are back on track with medical issues. On Friday, they both had their scheduled well checks. To minimize the amount of loading into the car and driving to the doctor’s that we would have to do, I decided to schedule both their well checks for the same day.

Here are the results:

Nathan weighed in at 33 pounds and measured at 38 inches tall, placing him at 60th and 64th percentile, respectively. I’m very happy about this since Nathan is known to be a picky, lazy eater.

Of course, Nathan is not Nathan without his usual quirks. Of all things, he was most afraid to get on the scale to be weighed and measured. He backed his butt up against Loi, arching his back, refusing to get on. So, we resorted to the following measures: First, the 5′8 office assistant had to get on the kid-sized scale himself to demonstrate what would be done once Nathan gets on. No harm was done. Yet, Nathan Boy still refused. Second, Loi tried to carry him on, but he’d pull his legs up, just as he did as an infant when we encouraged him to stand. Though Loi was able to get on the scale, with Nathan wiggling all about, no success was made with the weighing. I returned to the examining room to wait for him, knowing my child well enough to realize that you cannot force or coerce him to do anything. He just has to decide for himself if he wants to do it or not. Soon after, he comes running into the office to find me, and agreed to me carrying him on the scale to be weighed. As for his height, he allowed the pediatrician to walk him to the scale, hand in hand, without a single complaint or wriggling, to be measured. Loi and I stayed back at the examining room confused by our son’s moodiness. So, after all that drama, he had one booster shot. And, guess what? He didn’t make one peep…only a scrunchy face. Typical Nathan.

Justin weighed in at 16 lbs 11 oz and measured 27.5 inches. This was all very concerning to me because that means that he only gained 5 oz in 3 months, and barely grew an inch. His weight is no longer following the curve, but is below it. So, basically, he hasn’t gained any weight.

The pediatrician, Loi, and I discussed his feeding habits at home, and about his recent cold, and teething, and they came to the conclusion that his inability(?) to eat, or lack of eating has slowed down his weight gain. I, on the other hand, am worried that it may be something else. In the past, he’s been able to gain at least 1/2 a pound a month. We are going back to fortifying the formula to increase his caloric intake. We are encouraged to feed him a lot of formula, versus spending too much time on eating solids, although he should have both. We were given the OK for feeding him diary and egg products, but still no nuts or seafood. And, for those wondering, he still needs to be on formula since it will provide him with more calories and vitamins than regular cow’s milk. His ability to digest the cow’s milk is another issue we need to look out for. It seems he may be on the (expensive) Good Start formula for another 6 months.

In a month, we are scheduled to return to the peds for a weight check. Argh. Feedings and weight gaining are such big and frustrating issues. However, I hope that it’s nothing involving his GI tract, although I would like to see a GI doc for his opinion on why Justin may be eating less and throwing up more, now.

Anyway, will keep you posted. Thanks for checking in on our little ones.

August 13th marks two milestones in my children’s lives.

First, it is the day of Nathan’s coming into this world. He is my firstborn and represents true love. I never knew I could love anyone so much until I met him. From the moment I held him for the first time after 10 months of incubating him, 12 hours of labor, and 27 minutes of pushing, I knew I had a special boy on my hands. He turned his head to respond to my mom on one side, and my mother in law on the other when they called him. He also gave me eye contact. What kind of newborn who had just undergone the trauma of entering the birth canal does things like that? Mine, apparently. Nathan has never failed to amaze me since then. Upon meeting, most people think he’s 4 or 5, but, he’s now only 3. He knows how to negotiate. For example, I’ll tell him, “If you eat all your food (he is a lazy eater), you can have 5 m&ms.” He’ll respond with, “How about 10 m&ms,” then raise up both hands to show me 10. Nathan is a person you have to experience to understand how amazing he is. Words cannot describe how humorous and intelligent he is. I thought there was not possibly any more room in me to love another child the way I love him. I thought how unfair it would be for our other children (and if we should have any more) because I would not love them the same way.

Then, Justin came into the world and proved me wrong. We’ve jumped through firey hoops with this one, and would do it all again for him. One year ago on August 13th, Justin had his first open heart surgery that sent us all on an emotional rollercoaster ride. Now, a year later, he is a bouncing bundle of joy who just smiles, smiles, smiles.

My plan was to take the boys to the Aquarium of the Pacific in Long Beach to celebrate (they both love watching the fish swim around and around). But, of course, Nathan had one of his 20 minute tantrums because he was “tired”, and did not want to get in the car. Instead, he wanted his milk in a bottle (yes, he’s still on the bottle. He knows how to drink out of a cup, but loves his bottle because it’s comforting), lay on the couch, and watch CARS. I had packed everything into the car, with one remaining item left to load (Nathan), and he threw everything out, including his favorite white blanket and pillow, soiling it in disgusting dirt, germs, and wood chips (from one of Loi’s projects). I put it in the laundry closet. More crying ensued. Meanwhile, Justin was in my arms, staring at his brother like, “What the heck are you doing?.” There were moments when Justin even flapped his arms in excitement, thinking all the rukus was some game. When his brother did not respond to the arm flapping and squealing, he got confused and started to cry. I loaded Justin back in the car in the garage (to keep him away from the noise), and tried to calm Nathan down. I gathered all my patience up, bent down to his level and told him that I knew he was tired, and that I loved him. I gave him a hug, and that (finally) made everything better. By then, it was already 4 o’ clock, Justin was tired, and I was exhausted, so we all took a nap together.

An hour later, I woke up and prepared the house for our family to come over for Nathan’s 3rd celebration (so spoiled!). Loi came home with the food (prime rib and sides. Yum!) and built Nathan’s present (a bite sized CARS computer desk). After a 3 hour nap, Nathan woke up to opening presents from his aunties. After dinner and cake, Nathan received his gift from us that was hidden under a blanket.

We celebrated Justin’s anniversary by saying “Happy Anniversary.” We didn’t want to take this day away from Nathan.

We have had more parties this year than ever, with each of our boys celebrating their birthdays three times. But, I’m not complaining. I’ll take planning a party to planning a surgery any day!

Here’s to a healthy year for both my boys.

Apparently “technology” is not my middle name. I am a little lame when it comes to uploading pictures to our blog, hence the lack of pictures. I’m still trying to figure out how to use the iPhoto application to upload pics in an efficient manner. Uploading each one by one is a little painful. Over 500 digital images are trapped in our camera waiting to be revealed. I will give them a chance, don’t worry.

In the meantime, here’s a quick update in the life of the FourTrans:

-Justin’s teeth are finally coming in! First the right bottom, now the left. So cute! Lucky for us and him he did not experience any symptoms of teething pain. I was just beginning to believe that his smile would be forever gummy (seriously!).

-Justin had his first birthday party with over 150 attendees with a King of the Jungle Safari theme. It was awesome. Justin also had two heart friends there.

-We experienced our first “vacation” together as a family of four at Disneyland and San Diego for 5 days.

-Upon our arrival home, Nathan got sick and experienced some asthmatic symptoms for several days. We gave him inhaler treatments. He still has a runny/stuffy nose, but has improved.

-That week was spent gathering ideas and materials for his CARS themed party, as his party was scheduled to be that coming Sunday. I hit up Target and Michaels for inspiration and returned home with awesome party favors/activities. We ordered a jumper, ice cone machine, cake, and food.

-Friday, 8/8/08 was the opening ceremony of the 2008 Olympics in China, which we all gathered around the TV for. More importantly, we celebrated Justin’s official birthday with a gathering of family, cake, a birthday song, and presents.

-Sunday was Nathan’s turn to party (for his birthday)! It was mayhem, but I think kids like that sort of chaos where they’re allowed to run around and be free. The jump house was the hit of the party. Justin slept through most of it.

I will post pictures when I have more than 10 minutes of free time. The kids like to keep me busy. Boys!

Our hotel room in San Diego overlooking Mission Bay was quiet. I was the first one up after a long night of Nathan’s screaming. He was then sprawled across the king sized bed, with his arms and legs contorted in an unnatural position, and his head tilted back, breathing in every ounce of sleep. Loi was rolled to the edge of one side of the bed. I had been called up by Loi’s mom to fetch some breakfast in the Regency Club room (where they served 2 meals a day for an additional fee to the room, plus unlimited free water, coffee, and hot chocolate).

Before starting my day with a tooth brushing, hair combing, and face washing, I stopped by the sectional-turned-bed to check on Justin. He laid there on his back, with his head against a white, fluffy pillow, eyes closed, breathing comfortably, with his arms in a u-shape above his head. I lingered at this sight for a few minutes, taking in the fact that he was here with me, breathing. My stomach fluttered. It was like looking at my newborn child for the first time in complete astonishment that this child was mine. Like, how the heck did this happen? I have a child! But, in this case, it’s more like, he’s mine, and not completely perfect, but so perfect, and he’s here…still here.

And, we were on vacation. 16 months ago, I could not have fathomed taking Justin anywhere beyond the hospital and our home (remember, germs?). This past week, I’ve taken Justin to Disneyland (uh, germs central) to view the Electrical Parade and to absorb in the Disney scene, and on a boat ride around Mission Bay Lake in San Diego. He’s sat in restaurant high chairs (that were sanitized and covered in our own seat covering material, of course), lounged by a very busy public, hotel pool underneath a cabana, and experienced a bonfire while his cousins and brother were roasting marshmallows for their smores.

The chaos generated by his cousins, Nathan, admiring strangers, and activities sometimes distracted me from seeing this all for what it is–that Justin was alive and well enough to appreciate the chaos. He would squeal ahhhhh! in delight, bat his arms up and down, and bounce on his bum whenever anyone spoke to him. Or, he’d look for some attention, just by staring someone down until they’d say something to him. Sometimes, he’d even play hard to get and turn his head into my shoulder as though he was shy.

Although I’ve loosened up a bit, reality is I’m still scared as heck that something, anything could happen to him. I find myself still checking on him (to make sure he’s breathing) every so often while he’s napping or sleeping. I look out for signs of his heart or pacemaker failing–is he puffy? pale? breathing fast? not eating well? tired too often? different?

He’ll be turning one this coming Friday, but, I find myself not really wanting to talk about it. Don’t want to say why…

But, this past week has made me realize how far my Justin has come, and how much my perspective has changed. Very few moments that I spend with him are wasted on thinking about what I’d be doing next or in the future, and where we are headed. Every moment I spend with him is for him for that moment. I focus on appreciating the fact that he is breathing, alive, and happy…so happy.

I must admit that the darkness of the night, in my bed, is where I’ll reserve for my deeper, more anxious thoughts about surgeries, heart transplants, insurance, bills, etc. I’m only human, and fear will sometimes persuade me.

As always, though, seeing his smiley, sunshine face reminds me to appreciate, appreciate, appreciate.

Allow me to remind myself: this is a child’s birthday party. A scrumptious, chubby-cheeked, sunshine-faced of a child. But, this is a child, nonetheless, that I’m throwing a party for. Not a bride or groom.

It’s almost 11PM, and I’m sitting here with some party anxiety. My list of things-to-do has been checked and rechecked. My vision of the most imaginative and personal King of the Jungle Safari themed first birthday is materializing. I just hope everyone will enjoy themselves.

Bags of activities, party favors, and scrapbooking supplies are sitting by the door waiting to be loaded into the car to be transported to the banquet center. The items on my list that have been outsourced are at partial completion, and are promised to be done by tomorrow 9AM. Excited for such a, uh, grand event–it’s Justin’s 1st birthday party!!!–but, nervous. I just want everything to be right.

Stay tuned for pictures!

“What did you say, Gong Gong?”

“That was hilarious!”

“I want to do it again!”

And its lack thereof.

We were at Babies R’ Us today per Nathan’s request. He was looking for a present for himself. But, along the way, he found something for Justin, too–a multi sport balled musical mobile. Justin’s a little too old for that, so we had to put it back. After 30 minutes of searching and debating between the Chocolate Percy train DVD or the Sounds Trains Make DVD, we ended up with nothing and headed over to Target instead. But, I digress.

Justin’s baby book. While I was there, I also perused through the aisles in search of an animal themed blanket/comforter. None really fit my taste. Or, if it did, I had to buy the whole set, bumper, sheets, everything for 80 bucks. No thanks! I came across many other cute animal themed baby things such as lamps, baskets, picture frames, toys, calendars…baby books.

It suddenly hit me that Justin is one month shy of 1 year old and I have not updated his book since, uh, I don’t know when! A little freaked, I brought this to the attention of Loi.

“You blog for him,” he responded. “That’s just a more tech-y version.”

Hmmm….I thought about it. Nice reasoning, but not really. I haven’t recorded his milestones and the dates he’d achieved them–sitting, rolling, ahhing, reaching, smiling, responding to his name, recognizing familiar voices. Maybe there are more, but I haven’t really thought about it. It’s not that I don’t care–I call to tell the world when he’s done something great such as voluntarily moving his right hand to feel pinto beans for the first time. I just haven’t thought about recording it…until now.

I did it for Nathan, why not Justin? I’ve been too busy recording doctor’s appointments, surgery dates, medical notes, my notes on his medical condition, calls to to the Regional Center of Orange County and California Children’s Services, insurance bills, medical bills, etc., that I haven’t really carved a piece of time or energy to create a nice keepsake for little Justin. As I type this, I wonder if I had made a mistake in not recording this info because his neurologist may be interested in knowing his progress at our next checkup 4 months from now.

Everything I do from day to day with my little Justin is for mere practicality, thinking of how I can better prepare for his physical health today, tomorrow, the future. The baby book is just fluff that will end up in storage…Or, so was that mind-set of the past of mine. Do I really want my child (or myself) to look back at his childhood as all work and no play? Do I want medical records and notes to define the life that I had/have with him?

We share many beautiful moments every day. Today: I loved the way he grabbed my hair and pulled my head to his mouth to eat my face after being handed back to Mama by Physical Therapist. He cracked me up this morning when he demonstrated how he can recognize familiar voices and faces, now. Just when he heard from his bedroom Nathan’s tutor greeting Nathan with, “Hiiiiii, Nathan,” at the front door, he “ahhhhhhh” really loud. When I went in to pick him up, he kicked his legs wildly, batting his arms up and down, with an intent smile on his face. When he saw the tutor, he kicked and bounced in my arm while batting his (good) left arm, and scrunched his little face into a wrinkled, toothless grin. Playing the clapping game is his favorite game–the knows that at the end of the song I would bring his arms up and pat his hands on his head. He excitedly brings his left arm and hand up to his head right before I finish the song.

He has some amazing traits other than his half functioning heart: In physical therapy, he cannot seem to concentrate when there are other patients around him–he loves observing and socializing. He smiles and ahhs at other people when they don’t pay attention to him…but, they eventually do because he is so freakin’ cute. He smiles all the time, at almost everybody. He lights up the room. He loves to grab things, anything, especially Mama’s spoon and food. He rotates his wrist from side to side, back and forth, with an object in his hand to observe it. He knows how to hide toys from his big brother: Nathan coming? Must bring toy to side, underneath high chair tray. Otherwise, risk losing toy.

What else will he or I be missing/forgetting in the future of this beautiful little boy’s life because I forgot to capture it–on note, photo, or film? No use looking back at this point. It’s only been a year, and there will be many more (I hope) to come. The beginning of Justin’s baby book is the beginning of another chapter in our lives, one filled with more joy than angst…